Panther Creek's Austin Caputo: The Heart To Live

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(Photo: Austin Caputo. Courtesy Austin Caputo.)

Football likely saved Austin Caputo’s life. Football also could’ve just as easily ended it. A silent, serious disease, evolving and undetected, was festering inside a 17-year-old’s body, with the absolute power to strike him down at any moment.

However, due to a teenager who was acutely aware that something wasn’t right, a firmly determined mother, and medical teams in two states who ascertained the diagnosis, this soon-to-be graduate of Panther Creek High School, was saved.

Austin will never exert himself at sports again, but he has an entire life still awaiting him.

Hypertrophic Cardiomyopathy - or HCM - is widely believed to be the most common of all genetic heart conditions, which involves the overthickening of the heart muscle.

It is one of the leading causes of death in young athletes in America. So silent in fact, that in many cases, HCM strikes before those realize they are afflicted.

In other words, it’s often too late.

One in 500 in the population have HCM, which translates to as many as 600,000 in the United States alone.

The disease has claimed young soccer players, football players, basketball players and countless others.
As 2015 begins, the Caputo family has for which they are thankful.

Back in July, 2014, Austin was finishing up football practice for the Catamounts, a few weeks before the season opener of his senior season.

After practice ended, he noticed that he was still having a hard time breathing. He had a cough the next day, waited it out and still it persisted the next day at practice. Finally, it went away a couple of days later.

Austin and his mother, Cathie, weren’t too alarmed.

“At a young age, Austin was diagnosed with activity induced asthma so when he would get too active, I would have to slow him down and he would take his inhaler to help his breathing,” Cathie said. “Often times, it would make him cough because he had a hard time catching his breath. As the years went on, that seemed to have subsided and he still once in a while felt it but didn’t use an inhaler anymore.”

Later that summer – on August 1st – the shortness of breath and coughing happened again.

This time, alarm bells were ringing.

“I noticed my heart rate,” Caputo said. “It felt like it was pounding faster than should have been.”

Austin, not one to ever draw much attention to himself, let alone ask to go to a hospital, knew the situation was different this time.

“He came home from football practice around noon saying he needed his inhaler because he was having a hard time breathing. Seeing as he hadn’t used it in years, I no longer had one on hand. I told him we would need to make a doctor’s appointment and as a typical teenage will, he brushed me off telling me he didn’t have time so off to his senior pictures he went. I wasn’t too concerned because usually once he would calm down, things would return to normal for him.”

Later that night is when the Caputo story took a hairpin turn.

“At around 6:00, he came downstairs telling me we needed to go to the doctor’s. He still couldn’t breathe, his heart was palpitating and he was having chest pain.”

“My mom knew it was bad because I wanted to go see doctor,” Austin said.

Off to urgent care they went. The fear and the unknown were racing through Cathie’s mind.

“They brought him right in and threw him on the EKG machine,” she said. “I’ll never forget the look on the doctor’s face when he told me “this is not a normal EKG for a 17 year old”. They immediately put him on an ambulance and sent him off the Duke ER.”

With his Panther Creek football career in abeyance until a firm diagnosis, Austin was admitted to the hospital and spent the next three days having more tests conducted. On Saturday, the cardiologist suspected HCM, but stopped short of a confirmed diagnosis until other tests were in.

“I had never heard of it and had to write it down to remember the name,” Cathie said. “We had no known family history, so it was all so scary and confusing. I will never forget the doctor looking into my child’s eyes telling him he thinks Austin has it and it is a very serious condition. It scared the life out of me, but I had to stay strong for Austin. If he saw fear in my eyes, I know he would only feel fear of his own.”

“They thought they saw something, but weren’t sure,” Austin said. “We waited until Monday’s MRI and then found out that the walls were kind of thicker. In order to double check, they did some DNA testing hoping to find something, but that was going to take six to eight weeks. Mom wasn’t going to wait.”

Austin was discharged on Monday, and the mother in Cathie took over. She researched some websites the doctors had suggested and came across an organization called the Hypertrophic Cardiomyopathy Association (www.4hcm.org).

The Caputo’s plan found a new gear.

“The woman who runs the program, who happens to also have HCM, has a brief video and she suggests you go to an HCM Center of Excellence if you have HCM,” Cathie said. “It is not something a cardiologist sees every day and you are better with a doctor who specialize in the disease.”

Cathie was immediately on the phone and got Austin an appointment in Boston, ironically is where Austin was born and lived for 10 years, for October. But time was of the essence, and Cathie needed immediate answers.

“The thought of two more months of the unknown and waiting was killing me,” Cathie said. “I knew I had to do something as my son was filled with anxiety, even though he wouldn’t admit it. Not knowing and thinking you can have an arrhythmia and die is pretty scary at any age but seventeen? I called back and the woman asked me to send Austin’s records up and she would share them with the doctor, who was on vacation. She called me back and bumped the appointment up a month. In September, we flew to Boston and saw Dr. Martin Maron. They did a stress Echo on Austin and determined he did in fact have HCM and when he exercises, there is a significant obstruction that blocks the flow of blood in his left ventricle which is why he was getting those symptoms after football.”

Austin described the test results in a more striking way.

“Went up to Boston the week of the Panther Creek-Rolesville game to see the specialist. After the EKG, they said mine was abnormal, and representative of a 55-year-old.”

Austin’s walls were 14mm thick, two millimeters wider than the maximum.

“Once you reach 13mm, you have it (HCM),” Austin said. “When I exercise, there’s the obstruction of the heart, which blocks the flow much moreso than a normal heart.”

When the official diagnosis was rendered, Austin knew what it meant.

His life was very likely spared, but his athletic career was done.

Panther Creek finished one of its finest football seasons in recent memory in 2014. The Catamounts went 11-3 before losing in the regional semifinals to Garner. Caputo remained on the sideline with his supportive teammates every Friday night, wearing his jersey as Panther Creek’s biggest cheerleader.

“I have the best teammates anyone could ask for,” Caputo said. “They were unhappy that I couldn’t play, but have been there for me through this challenge.”

The Future

“The only thing they can do is a heart transplant, but I don’t need that,” Austin said. “I’m eating healthy and not going back to eating bad foods. No more salty foods with a lot of sodium. That’s unhealthy for blood pressure.”

“I feel that dealing with this has made me more mature, more like a grown-up,” Austin said. “It makes you realize stuff. Don’t let the little stuff matter. Try to move on, no matter what you’re facing.”

“I haven’t done a lot of reading on it (HCM), but I know what it is, and have educated myself on it. Now that it’s been diagnosed and I know how to live with it, I’m not worried.”

“When I was in the hospital for two days, doing nothing, I had no idea what it was,” Austin said. “I sat there and thought. I honestly knew at that point, with the fact that I found it would be fine. I’m really fortunate that as long as I had been playing, that nothing bad had happened.”

“The basics in living with this disease are that you’re not allowed any straining exercise, and that’s permanent,” Austin said. “I can exercise, do light-weights, run or jog so long as I can hold a conversation.”

“I could play golf, although I’ve never played golf before.”

Mom’s Perspective And Plea

Austin’s mother has resisted most of the urges to ask why and assign blame on what could have happened. She’s now just focused on Austin’s future, which with HCM under control, is as bright as ever.

“Austin was very lucky to have gotten the signs as many people never get a warning sign,” Cathie said. “Looking back, I remember days pushing Austin telling him he needs to push himself 110% if he wants to play football. I would tell him he didn’t practice enough or work hard enough. He would get so angry at me and tell me he was. Looking back now, his 110% couldn’t compare to a normal healthy kid. His obstruction would cause him shortness of breath so a healthy kid’s 50% effort would leave Austin feeling like he gave it 110% and would leave him gasping for breath. He always thought it was because he was out of shape or it was his asthma. Now we know otherwise. I am thankful that nothing tragic happened to him. We are so very lucky.”

Austin’s condition is not something he’ll ever live without, and there are risks to his future family down the road according to his mother.

“When he becomes an adult, he has some decisions to make as he has a 50% chance of passing this disease to his child(ren),” Cathie said. “The good news is we now know it’s in the family, we know what it is and what we need to do and that screening is imperative. We also now know many times activity induced asthma is often times misdiagnosed. Could his have been HCM all along? We don’t know. But now we know what to look for and he has some big decisions ahead of him.”

One in 500 in the United States are affected by HCM. The disease does not discriminate. Caucasians, African-Americans, Latinos and others are all equally targeted by HCM.

Cathie has one final plea to the parents of young athletes.

“If this story helps just one person, it’s worth telling. HCM affects 1 in 500 people and many other undiagnosed people never know they have it. It can express itself at any point in life. It’s important to know your history, talk to your doctor, and have the appropriate screening, if necessary.”

“From day 1 it’s always just been Austin and me. We have always shared a special bond, and I am so grateful for that. He is truly a gift.”